Reducing Stigma and Discrimination
Stigma and discrimination have been identified as tremendous barriers to addressing HIV/AIDS (Mann, 1999; Paxton et al., 2004a and b). Stigma was defined by Goffman (1963) as a discrediting attribute about an individual or group that serves to devalue that person or group in the eyes of society. Parker and Aggleton (2002) suggest that stigmatization and discrimination are manifest in a number of contexts, including within families, communities, schools, employment, travel/migration opportunities, health care settings, and HIV/AIDS programs. Hardee et al. (2009b) found remarkably consistent views related to people living with HIV and AIDS in a national survey in China, suggesting that stigma and discrimination can be pervasive in societies. Internalized stigma is the shame, guilt or fear that results from discrimination and can also affect family members and health providers. Internalized stigma may deter people from accessing needed HIV services (Brouard and Willis, 2006).
Stigma Affects Prevention Behaviors
In a review of interventions to reduce HIV/AIDS stigma, Brown et al., (2003) noted that stigma affects prevention behaviors, test-seeking, care-seeking, quality of care provided to HIV-positive clients, and perceptions and treatment of people living with HIV and AIDS by communities and families. They and others, including Parker et al. (2002), contend that HIV/AIDS-related stigma is often layered upon other stigma, for example, that HIV is associated with engaging in illegal behavior such as sex work and drug use. A study in China with 10 AIDS health professionals and 21 adults living with HIV found that the Chinese public assumes that any woman who has HIV is a sex worker (Zhou, 2008). Women are often considered to face the double stigma and discrimination associated with HIV and their inferior status to men in society (Armistead et al., 2008). [See also 11A. Transforming Gender Norms] A study of 2,369 men and women in India at high risk for HIV found that women reported higher perceived community HIV/AIDS stigma than men (Zelaya et al., 2008). Findings from a qualitative research study conducted in 2003 in Vietnam found that “women living with HIV and AIDS tend to be more highly stigmatized than men...While women tend to be ‘blamed’ for acquiring HIV and AIDS, men are often forgiven by family and society. The consequences of stigma are also more severe for women, who are more frequently sent away from their families and separated from their children than men are” (Hong et al., 2004: 2). A qualitative study conducted from 2001 to 2003 in rural and urban Ethiopia, Tanzania, and Zambia with structured text analysis of more than 650 interviews, and 80 focus group discussions, and a quantitative analysis of 400 survey respondents found that “constraints are particularly acute for young, married women with HIV who try to balance the stigma of being HIV-positive with the reality that childbearing is often their only route to social status and economic support” (Nyblade et al., 2003: 51).
In the words of an HIV-positive man who is an injecting drug user, “Men are forgiven. Women would not be forgiven. Women are blamed even if they are unlucky and sleep with a husband who used to sleep with many girlfriends or is an IDU and brought the disease to his wife” (Nguyen et al., 2009: 146). An HIV-positive woman tested in a PMTCT program in Malawi explained that, “In the community few people accept HIV-positive mothers. They think you are HIV-positive because you were just moving around and sleeping with a lot of men. They keep gossiping about you. Some even do witchcraft against you so you die faster. It is thus better that you keep your HIV status for yourself without telling others” (Bwirire et al., 2008: 1197). A cross-sectional survey of 148 youth living with HIV/AIDS in Kinshasa, Democratic Republic of the Congo (DRC), of whom 79% were female, found that females reported more personalized stigma and stigma related to public attitudes compared to males (Mupenda et al., 2008). Yet, many studies of stigma and discrimination do not collect sex-disaggregated data, making it difficult to determine differential experiences that men and women face.
Misconceptions About HIV Continue to Exacerbate Stigma and Discrimination
Inadequate information about how HIV is transmitted adds needlessly to the stigmatization and discrimination faced by people living with HIV. For example, findings from a qualitative research study conducted in 2003 in Vietnam found that lack of detailed understanding of the routes of HIV transmission led to isolation and rejection of people living with HIV and AIDS, avoidance of their goods and services, and secondary stigma against their family members and children. Further, many families of people who are HIV-positive or have AIDS take unnecessary ‘preventive’ measures, such as eating separately, adding needlessly to the already significant emotional, economic and time-related burdens of care-giving (Hong et al., 2004). In Mali, “...the fact that social transmission (through sharing of food, bowls, latrines, blankets and clothes) was widely thought to be feasible is probably related to the perceived need to quarantine suspected AIDS cases...” (Castle, 2004: 6). It’s critical to educate parents and teachers so they can accurately educate young people as well. Interviews and focus groups in Mali found that three-fourths of the teachers in the study held mistaken beliefs about methods of HIV transmission that they then communicated to their students (Castle, 2004).
Interventions to combat stigma should include interventions for individuals, which create awareness of what is stigma and the benefits of reducing stigma, environmental interventions, i.e., meeting the need for information, supplies and training; and structural, i.e., addressing policies and laws (Nyblade, 2009). “Understanding the association of HIV and AIDS with assumed immoral and improper behaviors is essential to confronting perceptions that promote stigmatizing attitudes towards individuals living with HIV” (Nyblade et al., 2009: 4). The Commission on AIDS in Asia reviewed over 5,000 papers; commissioned 30 papers; surveyed 600 members of civil society; conducted five country missions and held two sub-regional workshops and concluded that it is crucial to “avoid programmes that accentuate AIDS-related sigma...Such programs may include ‘crack-downs’ on red-light areas and arrest sex workers, large-scale arrests of young drug users under the ‘war on drugs’ programs and mandatory testing for HIV” (Report of the Commission on AIDS in Asia, 2008: 17). A 2008 review of published literature on stigma in the HIV/AIDS epidemic that included 390 articles, of which 176 were either global in scope or were in a developing country context, found that “there are only a small number of published studies on interventions and programmes designed to reduce HIV/AIDS stigma” (Mahajan et al., 2008: S74). An earlier review in 2003 found that among 22 relevant studies, “No study looked at different messages that could be tailored to men and women, nor were there any efforts to compare differential impact of male versus female contacts for different gendered audiences” (Brown et al., 2003: 66).
With the introduction and expansion of antiretroviral treatment, there was hope that stigma and discrimination would decline, however, “despite ongoing research, there is not yet conclusive evidence to support this hope” (Gruskin et al., 2007b: 12). A household probability sample of individuals ages 18–32 with 14,657 participants from Thailand, Zimbabwe, Tanzania, and South Africa found that lack of knowledge of antiretroviral therapy was significantly associated with increased personal endorsement of stigma towards people living with HIV in all sites (Genberg et al., 2008). What is clear is that reducing stigma improves quality of life for women living with HIV, especially in the realms of employment and schooling, in addition to improving quality of life within families and communities.
[See also Chapter 8. Meeting the Sexual and Reproductive Health Needs of Women Living with HIV, Chapter 9. Safe Motherhood and Prevention of Vertical Transmission, and Chapter 13. Structuring Health Services to Meet Women’s Needs for further discussion of stigma as it relates to those topics.]